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Family caregivers who would be unwilling to provide care at the end of life again: findings from the Health Survey for England population survey

Johnson, Miriam J.; Allgar, Victoria; Macleod, Una; Jones, Annie; Oliver, Steven; Currow, David

Authors

Victoria Allgar

Annie Jones

Steven Oliver

David Currow



Contributors

Jo Thompson Coon
Editor

Abstract

Background Family caregivers provide significant care at the end of life. We aimed to describe caregiver characteristics, and of those unwilling to repeat this role under the same circumstances. Methods Observational study of adults in private households (Health Survey for England [HSE]). Caregiving questions included: whether someone close to them died within past 5 years; relationship to the deceased; provision, intensity and duration of care; supportive/palliative care services used; willingness to care again; able to carry on with life. Comparison between those willing to care again or not used univariable analyses and an exploratory multiple logistic regression. A descriptive comparison with Health Omnibus Survey (Australia) data was conducted. Findings HSE response was 64%. 2167/8861 (25%) respondents had someone close to them die in the previous 5 years. Some level of personal care was provided by 645/8861 (7.3%). 57/ 632 (9%) former caregivers would be unwilling to provide care again irrespective of time since the death, duration of care, education and income. Younger age (≤65; odds ratio 1.09, 3.48) showed greater willingness to provide care again. Apart from use of palliative care services, findings were remarkably similar to the Australian data. Conclusions A significant group of caregivers would be unwilling to provide care again. Older people and those who had not used palliative care services were more likely to be unwilling to care again. Barriers preventing access for disadvantaged groups need to be overcome.

Journal Article Type Article
Publication Date 2016-02
Journal PLoS ONE
Print ISSN 1932-6203
Electronic ISSN 1932-6203
Publisher Public Library of Science
Peer Reviewed Peer Reviewed
Volume 11
Issue 1
Article Number ARTN e0146960
Pages e0146960
Institution Citation Johnson, M. J., Allgar, V., Macleod, U., Jones, A., Oliver, S., & Currow, D. (2016). Family caregivers who would be unwilling to provide care at the end of life again: findings from the Health Survey for England population survey. PloS one, 11(1), e0146960. doi:10.1371/journal.pone.0146960
DOI https://doi.org/10.1371/journal.pone.0146960
Keywords General Biochemistry, Genetics and Molecular Biology; General Agricultural and Biological Sciences; General Medicine
Publisher URL http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0146960
Copyright Statement © 2016 Johnson et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Additional Information Copy of article first published in: PLoS ONE, 2016, v.11, issue 1.

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Copyright Statement
© 2016 Johnson et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.







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